Saturday, December 27, 2008

Life After Losing a Child

I met Allen Goldberg more than eight years ago, when I wrote an article about his son Henry and the fight Allen and his wife, Laurie Strongin, waged to save the little boy’s life. They lost, and Henry Strongin Goldberg died six years ago this month, at the age of 7.

Allen chronicled Henry’s last days in a blog, and, after his death, wrote letters to the boy. At first there were several a day. As Allen healed, the letters were less frequent but still steady. They brought Henry news, mostly about his younger brothers — Jack, now 12, who was his best friend, and Joe, now 7, who was only a year old when Henry died.

What follows is a letter from Allen to Henry, about keeping memories alive. It’s about the ache of parenting when one of your children is gone, about creating memories, and about introducing your youngest son to the older brother he never really knew.

By ALLEN GOLDBERG

Dear Henry —

I made a space on Joe’s night table for that photo book of pictures of you and him together. It is right next to his iPod, his Spongebob early reader books, his mini footballs and assorted baseball cards. As far as I’ve noticed, he doesn’t look at the photo book. I can’t blame him. It is pretty thin.

After you died I don’t think I gave a whole lot of thought to how Joe would remember you. Mom and I have seven years of memories of living, loving and trying to save your life, all laser-etched into our hearts. You and Jack had a special relationship that I know he treasures, and that I captured in hours of video and albums full of photos of the two of you on the beach charging into battle shoulder-to-shoulder against imaginary dragons and laying around hospital rooms. He knows you, and he misses you in his own way that I can’t even begin to understand.

But for Joe, he never got to throw a ball with you or make a snowman with you in the front yard, or stand in front of the TV when you were trying to watch so you could point out in true Henry fashion, “Hey, Joe, you make a better door than a window.”

Joe is now exactly as old as you were when you and I made that last father-son trip to Minnesota. Your doctors were only going to fine-tune your meds then, not show me how to remove a breathing tube so you your life could gently come to a close in Mom’s arms. But it all went very wrong very fast. At age 7, you were old enough to understand how sick you were, and maybe you were aware that you might die. Mom used to think that after a time you were making it O.K. for us to let go of you. Either you were wise beyond your years, or there are things in the way life and death work that we don’t fully understand.

Making the photo book for Joe added a new dimension to the sadness I feel about your death. Joe is now very aware that he didn’t have enough time with you; the lack of photos of the two of you together underlines that sad truth. “Brothers: Joe and Henry” has a mere six photos of the two of you in it. That’s all we have and together they hardly add up to a book. I even threw in a few pictures of you playing baseball and other sports so Joe would know that the two of you have a lot in common.

To be honest, you don’t look so good in the pictures I managed to find because you were so sick when they were taken. The great things about the pictures of you playing sports is that you look like you — in other words, strong and handsome.

In the later, sicker photos, you were huge, blown up on steroids. I do have video that I took of you the day Joe was born, a day when you were stuck in Georgetown Hospital and Mom was over at Sibley Hospital, where she’d just had your baby brother. You gave a warm greeting to Joe and said “hi” to Mom. It’s a reminder to me of another bunch of videos, the ones I took right after you were born and were still in the NICU, and that I took down the hall to Mom because she wasn’t allowed out of bed and you weren’t able to leave the incubator. So I guess we were used to making do with pictures from the get-go.

I don’t know why I didn’t take more pictures during the year of you and Joe. Maybe it was because things were pretty crazy with a new baby and you in and out of the hospital. Maybe I was so confident you were going to get better that I didn’t think I would need to use photos as a way to help Joe know you.I certainly take a lot of photos now, though. This fall, one of the parents at Joe’s baseball game asked me if photography was my hobby because I am armed with a still camera and a video camera at every game. The honest answer came tumbling out of my mouth. I told her that I take all these pictures because Joe had an older brother — you — who died, and I have a need to make sure I capture everything in Joe’s and Jack’s lives in case something ever happens to them.

I imagine that wasn’t the answer she was expecting.

I don’t just take photos of your brother, though; I take all the kids. And after each of the Joe’s games, or a school assembly, or anything, really, I immediately scan through all the shots and e-mail the best shots of other kids directly to their parents.

I am certain there are photos of you out there sitting on someone’s camera or computer. Maybe even photos of you and Joe.

Love,Dad

Two more things I should mention:

First, Laurie and Allen have created the Hope for Henry Foundation in his memory, to bring gifts and parties and smiles to children who spend much too much time in the hospital. I am on their board of directors. You can learn more about their work here.

Second, today is Allen’s birthday, one week after the anniversary of Henry’s death.